Our New Schedule, Day +47

We are continuing to adjust well to the real world. We still have so far to go before we get anywhere close to our normal lives but being out of the hospital is definitely a start. I've noticed that that are a couple of big changes in Olivia since we've left the hospital....here's the list:

-Talking more, using more sentences, talking to more people
-Fine motor skills have definitely improved. She's lacing beads on a string, she can label her shapes and her colors consistently and correctly.
-Gross motor skills have definitely declined. I was expecting this after several weeks of her being in the hospital but it's still hard to watch. She will drop something on the floor and then bend over at the waist to pick it up and then is not able to easily stand up again. She also can't go up and down stairs by herself anymore and forget crawling up or down from the couch or her bed. Physical Therapy is in the works but I'm sure it will be a little while before we see some real improvement.
-More social with strangers (a good thing in our case since Olivia was painfully shy). She will now give high fives and wave
-More interested in pretend play, will pretend to have her frog jump around or sit on a book
-More interested in television. She still doesn't love the TV but there were a few PBS shows that she really seemed to enjoy while in the hospital, Elmo and Sid the Science Kid are her favorites.
-She's much more verbal about expressing her feelings or preferences and is getting better about telling us what hurts, what she wants and doesn't want


Now that we've been out of the hospital for several days we've established a little routine so I can share what our days here are like. It's breathtakingly exciting, I'm sure you all sitting on the edge of your seats :)

7:15 am--My alarm goes off, the coffee starts brewing
7:30 am--I do Olivia's labs and start her morning IV meds. I can't believe how I comfortable I feel doing all of this! I draw blood from Olivia and then I administer her steroid by IV and then her FK 506 via IV using a pump since it goes over 2 hours. Both of these medications suppress Olivia's immune system in hopes of preventing Graft vs. Host Disease.
7:45 am--I leave Olivia and Amy to go back to sleep while I drive to drop off her labs.
8:10 am--I am back from dropping off the labs and I go to the gym in the apartment complex.
9:00 am--Back from the gym, I shower, pick up around the house a bit, wake up Olivia and Amy, get breakfast together, administer Olivia's oral meds (she takes 7 plus a multivitamin and an anti-heartburn tablet).
10:30 am--Leave for clinic
11:00 am--Appointment at clinic, at least 2 hours, today it was more like 4.
3:30 pm--Home for late lunch and a couple of oral meds for Olivia and then she goes down for a nap while I do very exciting things like pay bills, fold laundry, and blog.
5:30 pm--Wake Olivia up from her nap, play and get dinner together
7:00 pm--Bath time for Olivia
7:30 pm--Time for the night time IV meds and then some more playing
8:30 pm--Night Time oral meds and bed
9:00 pm--Clean and attempt to get things organized for the next day all while obsessively watching Bravo and the TV guide preview channel both of which I missed dearly while in the hospital as we didn't have either
11:00 pm--Sleep! After an hour or so of thinking I will fall asleep with the TV on I finally just turn it off.